ALBUQUERQUE, N.M. (KRQE) – A seven-year-old boy who was diagnosed with a rare disease at just two years old has spent nearly every day since fighting for his life. Now, he’s in the hands of doctors at the UNM Children’s Hospital.
Around five years ago, Jessica Hibben and her son Rafe’s lives changed forever. “Up until that point he was pretty healthy,” said Hibben. At two years old, Rafe was diagnosed with a rare genetic mutation, IQSEC2. That mutation commonly causes seizures and intellectual disabilities but can also impact someone physically.
“Unfortunately, everything’s kinda snowballed into a chronic condition and a chronic need to stay in the hospital quite frequently,” said Hibben. Rafe is what they call a “frequent flyer,” spending most of his life in and out of the hospital. Rafe and his family have now traveled to five different states for treatment. They’ve spent the last ten months in New Mexico at the UNM Children’s Hospital.
“We’re able to bring that comfort to the parents and just talking to them and letting them know that everything is going to be okay and really walking side by side with them,” said Child Life Director Ana Bacon. As Rafe gets older, the diagnosis is expected to get more and more complex. “With this many needs, this many medical issues, I wish I could take them all from him, but I can’t,” said Hibben.
Right now, they focus on the little things they can do to bring joy like decorations and all kinds of celebrations. Finding solace in an uncomfortable place.